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Any good results from taking Amikacin?? and what were side effects?

Posted by gaylewroc @gaylewroc, Feb 4, 2019

I am new to this forum, but not new to bronchiectasis and MAC.I had my first sign of bronchiectasis in 2000, finally diagnosed in 2011 and.by then I also had a MAC infection. Took the triple cocktail for two years (2012-2014) until my vision started to be affected. I've been on and off various antibiotics the last few years but now since October I've been having more flares and last week CT scan shows disease progression. My ID Doc retired from private practice..and I've only had my PC and Pulmonologist..I'm about to get a referral to a new ID...no specialization in MAC..and I don't know what to expect. I will no longer take many of the drugs because of side effects that were pretty severe. So...big question....Who here has taken Amikacin??? and what kind of side effects did you have?? I am most likely going to Mayo in Jacksonville but I know my options are really limited. I just want some insight. Thanks.

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Ethan McConkey, Moderator | @ethanmcconkey | Feb 6, 2019

Hi @gaylewroc and welcome to Connect.

I wanted to connect you with fellow members who have taken Amikacin so that they can hopefully let you know how successful or unsuccessful the medication was and what the side effects are. Meet @heathert and @hydrang3a

Back to you, what other medications have you used? How are you feeling right now?

REPLY
gaylewroc | @gaylewroc | Feb 6, 2019

Hi Ethan! Thanks for responding!! I've been fighting MAC for many years, took the triple drug therapy 2014-2016 until vision changes. Probably Rifampin..I was in very bad shape by then. Thankfully my vision is mostly back to normal for me..I've been on and off Clarithromycin for the last few years to hold things at bay but I've been pretty bad since last fall. I do not have a lot of support here with my Doc's. My Pulmonologist is always booked up, I had an ID Doc but he stopped seeing patients in private practice..just works in the Hospital. My Primary is great but does not want to deal with the lung issue. I had a CT scan a week ago Tuesday and no one has even read it completely!!!!

I was happy to find this group and last week saw someone recommend a Doc at Emory in Atlanta. I live in Birmingham AL...not far..and my Daughter lives in Atlanta so I go there often. As of now my records are going there to Dr. Swenson, and they are trying to get me in as quickly as possible...because normal scheduling would put me in mid-August!!

I dread going back on the triple cocktail!! I know there are not many other options. That's why I'm looking for experiences with Amikacin..because that may be what's left to take. I can not take any fluoroquinolones...almost died from those!! It seems that not many people have taken it????

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1 reply
heathert | @heathert | Feb 6, 2019
In reply to @gaylewroc "Hi Ethan! Thanks for responding!! I've been fighting MAC for many years, took the triple drug..." + (show)
@gaylewroc

Hi Ethan! Thanks for responding!! I've been fighting MAC for many years, took the triple drug therapy 2014-2016 until vision changes. Probably Rifampin..I was in very bad shape by then. Thankfully my vision is mostly back to normal for me..I've been on and off Clarithromycin for the last few years to hold things at bay but I've been pretty bad since last fall. I do not have a lot of support here with my Doc's. My Pulmonologist is always booked up, I had an ID Doc but he stopped seeing patients in private practice..just works in the Hospital. My Primary is great but does not want to deal with the lung issue. I had a CT scan a week ago Tuesday and no one has even read it completely!!!!

I was happy to find this group and last week saw someone recommend a Doc at Emory in Atlanta. I live in Birmingham AL...not far..and my Daughter lives in Atlanta so I go there often. As of now my records are going there to Dr. Swenson, and they are trying to get me in as quickly as possible...because normal scheduling would put me in mid-August!!

I dread going back on the triple cocktail!! I know there are not many other options. That's why I'm looking for experiences with Amikacin..because that may be what's left to take. I can not take any fluoroquinolones...almost died from those!! It seems that not many people have taken it????

Jump to this post

@gaylewroc Hi and welcome. I took Amikacin for a year on the trial and it was fantastic, only a bit of a sore throat and loss of voice at first no other side effects. Knocked my MAI back to a clear sputum, but it will return.

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2 replies
gaylewroc | @gaylewroc | Feb 6, 2019

Thanks so much for the response. I guess not a cure but a good treatment.

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cindyrue | @cindyrue | Feb 6, 2019
In reply to @heathert "@gaylewroc Hi and welcome. I took Amikacin for a year on the trial and it was..." + (show)
@heathert

@gaylewroc Hi and welcome. I took Amikacin for a year on the trial and it was fantastic, only a bit of a sore throat and loss of voice at first no other side effects. Knocked my MAI back to a clear sputum, but it will return.

Jump to this post

Thank you something to think about in our journeys

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beatitnow | @beatitnow | Feb 9, 2019
In reply to @heathert "@gaylewroc Hi and welcome. I took Amikacin for a year on the trial and it was..." + (show)
@heathert

@gaylewroc Hi and welcome. I took Amikacin for a year on the trial and it was fantastic, only a bit of a sore throat and loss of voice at first no other side effects. Knocked my MAI back to a clear sputum, but it will return.

Jump to this post

@gaylewroc So, why are you convinced that it will return? Do you know length of time that usually passes before it returns? Is Amikacin an inhaled antibiotic? Did you still take the other Big 3 along with the Amikacin? Thanks for your help. (I have been on the Big 3 for almost 2 years now, and no clear sputum sample yet.)

@heathert How long did you take Amakicin? And, you just got nodules after 6 months, but no mycobacterium infection yet? Thank you for your help! 🙂

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2 replies
gaylewroc | @gaylewroc | Feb 9, 2019
In reply to @beatitnow "@gaylewroc So, why are you convinced that it will return? Do you know length of time..." + (show)
@beatitnow

@gaylewroc So, why are you convinced that it will return? Do you know length of time that usually passes before it returns? Is Amikacin an inhaled antibiotic? Did you still take the other Big 3 along with the Amikacin? Thanks for your help. (I have been on the Big 3 for almost 2 years now, and no clear sputum sample yet.)

@heathert How long did you take Amakicin? And, you just got nodules after 6 months, but no mycobacterium infection yet? Thank you for your help! 🙂

Jump to this post

@beatitnow , my infection has never been gone..I took the triple drug therapy for over 2 years. I am asking about Amikacin because that's the only drug I haven't tried. My scan as of almost 2 weeks ago shows disease progression, and active infection so I'm looking for further treatment.

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1 reply
beatitnow | @beatitnow | Feb 9, 2019

@gaylewroc...sorry, I guess I was thinking there was another individual that had success with Amikacin, but I guess all of my question above goes to @heathert. I hope all goes well with what you choose. Please let us know how you do with whatever you try. Thank you!

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